Posts: 4

Topic: hopefully chemo for my sister tomorrow

My sister Becky will hopefully have chemo tomorrow after it has been postponed at least 10 times. High bilirubin, fever, high wbc but maybe she has a chance now. She is still very passive about this whole thing. Three weeks ago , with high bili, the onc told her that most docs would not give chemo but he was willing to give this last ditch effort if she was. When she said she didn't want to go back to the hospital he said the other option was hospice. That scared the crap out of us so she went to the hospital to have chemo inpatient. I read that as she would die w/o the chemo and sooner rather than later. Well , I finally went home later that night and e-mailed everyone I knew and ask for prayer that her bilirubin would come down so she would have a better chance with the chemo.Onc had said she would only get half of the Gem. Anyway, the next morning the onc came in and asked her what she had done the night before and she said , "we prayed" and he said" it worked"as her numbers dropped overnight and they continue to drop. Other things have conspired to keep her from the chemo. Infection in her drains, fever, which they now believe was tumor fever, but today she got the tubes replaced in both drains and seems to be good to go. My only concern now is that she still is acting very passive, will not sit up in a chair, refuses to get a bath, eats only when we push and begs for ativan constantly. Continues to complain of nausea constantly, she is on as much phenergan as possible , refuses to try zofran again but today she tried the gel and from my point of view it helped alot but she says not. all she wants to do is stay as medicated as possible and not involve herself in anything . Is this normal? We have told her over and over that if she does not want the chemo, it is her choice and she says she does , but her actions tell another story. Should I push her or let her lay there? Sometimes I just want to shake her and the next minute I want to crawl up in that bed and just hug her. Anyone have experience with this behavior? Any advice would be greatly appreciated.I am so tired and frustrated Thanks for listening

Re: hopefully chemo for my sister tomorrow

Dear SRP, my uneducated guess is that your Sister is either very depressed or in a total denial. I would definitely let the ONC know what is happening. Either way there are things she can be given. I think the Ativan is for agitation, so if she is taking a lot that could show that it either isn't really helping or she is using it to numb herself. I know how hard this is for you but honestly someone needs to let her ONC know. WIshing her well on the chemo tomorrow and please do keep us updated.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: hopefully chemo for my sister tomorrow

Hi SRP, Just thought I would introduce myself and offer some support. Becky's nausea can be caused by high bilirubin. Getting bilirubin down can be hard . Has your doctor offered any medications for this? Unfortunately it comes with the disease since high levels of bilirubin is caused by bile not being able to pass through the liver. Keep her well hydrated and try fruit smoothies (my husband loved them - I would add protein powder to them to boost his energy). I believe her attitude is not all that unusual when it comes to cc. Have her ammonia levels checked. High ammonia levels can cause confusion and odd behaviours. Lactulose can help with this. Wishing you and your sister all the best; I know the hard road you travel. Nancy

Re: hopefully chemo for my sister tomorrow

Hi there, I think it is time to step back and think about what is happening here.Chemo is a harsh treatment and also a treatment that does not work with maybe up to 70% of cc sufferers and then it will not cure just buy more time.Let your sister decide honestly what she wants to do,it is not a time for pushing her to do anything,this is precious time for you all. Take care Janet

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